Posts: 17

Topic: Finally, all of the answers

Hi everyone...Lee and I got here to Rochester on Saturday, April 12...rested for our big day...Monday, April 14...bright and early around 6:30 the tests began! Boy! Do they love testing around this place!!! Lee has undergone somethings that we never even knew existed!! It has been an incredible experience...everyone is wonderful...their system is simply amazing...and I know in my heart that God brought us here to this very fine place...even if it was to tell us this afternoon, that the cancer has spread...it is in his lymphnodes now and transplant is no longer an option...chemo and radiation really aren't either...considering it that it will not work...our goal now is to get him as comfortable as possible and keep him that way until the end....the docs said around three months left...I told Lee that this is not a death sentence...the Lord is the one who says when we die...not the doctors...I cannot believe how terribly, terribly sick Lee has gotten within the last 3 weeks...I am watching him slip away from us every minute of the day...that is why I must make the most of every day for him....please pray...I believe pray works...even if the miracle isn't healing....it is peace and happiness for Lee these last few months.

Re: Finally, all of the answers

Heather, I am so sorry. You & everyone on this board will be in my prayers. I believe from your posts that Lee is a fairly young man to have CC. We also got bad news from the oncologist today. I feel my dad is slipping away, also. It seems when we get one thing looked at, another is just around the corner. He is now having the ascites in his abdomen, feet & legs. I asked the oncologist about CC being a rare cancer & she agreed, but said in the last week, she's had two forty-one year old women diagnosed with it. It's just very sad. You & your family will be in my prayers.

Re: Finally, all of the answers

Hi Michelle...Yep..Lee is 37 years old...we cant seem to believe this is happening...I spoke to my brother last night on the phone and he said that it is just "inhumane"....and ya know what it is...I just have to believe that in all this pain and suffering...something is good is going to come out of it for the glory of the Lord...Romans 8:28...it is just so very, very, hard.

Re: Finally, all of the answers

Heather - My husband just turned 38 and has been battling this for just over a year. His doctors and I agree that keeping him as comfortable as possible is so important. I will keep you and Lee in my thoughts. - Colleen

Re: Finally, all of the answers

Colleen, Tanoland, and Heather,

I just broke down when I read this. How can it be that this is effecting so many young people. You are right tanoland, it kind of makes you hate life. Heather, you have a strong mind and heart. Keep your faith. I hope it will guide you. I almost lost faith at one point and it really becomes a struggle when you see the pain your loved one is going through. Colleen, you are selfless in your words. Please take time for yourself. My fiance is now 31. He has had two birthdays since diagnosis and we expect many more to come. I will pray for all of you.

Re: Finally, all of the answers

You are just living your life perfectly fine and life is wonderful and then your whole world is turned upside down. My sister's has spread in so many places so fast, I just worry how much time we will have. And she is in constant pain. I try to be a support to her, but she's not really wanting any support. She's so angry. I love her so much.

Christina, it's nice to hear that your fiance is doing good in his fight. Let's pray for everyone else to do the same!

Re: Finally, all of the answers

I think that is the hardest part of everything. When Chucks was initially diagnosed, he was 29 and had just graduated from college. He was so angry at the world thinking "why me" It was very hard for me because us as family members, wives, husbands, friends think the exact same thing. I know I did. "why me" "why does this have to happen to my boyfriend?" I was even selfish at one point thinking "I am going to be the one left here unhappy and alone" You can only do your best. Give your sister all of your support and love. I pray everyday for all of you. I wish I could say more.

Re: Finally, all of the answers

Dear Heather,All good thoughts going your way in the hopes that your Lee is at peace and maybe even has a miracle -- who knows? It's so hard on both of you but you seem to have a great attitude. All the best to you.

Tanoland, I see myself in your postings, though it was my mother who had cc, not my sister. I am so outraged at the injustice of life (and would feel the same if it were my only sister, whom I love dearly though she drives me nuts!) When you love someone, I know you feel like there's a knife in your gut when you see them suffering and you're helpless to do anything. But I wanted to respond to you about some specific things you said:

- Your sister is in constant pain. This should NOT be happening in today's day and age. What are her doctors thinking???Can you get anything prescribed for her? It's horrible enough to see your loved one deteriorating, but terrible pain makes it so much worse for you - and of course, mainly for her. My mother was taking morphine for breakthrough pain in between her oxycontin, and in the beginning she just needed a little bit to make her comfortable, and it made an amazing difference. I hope your sister can get some relief from the pain. The poor thing!

- The disease seems to be aggressive. - In your sister's case it seems to be spreading rapidly, as it was in my mother's case, but sometimes it just decides to slow down all by itself, or with the help of chemo, so there is always hope. It's hard to hang onto, I know, but you have to have hope just to keep your sanity. Many people here have had aggressive cancer that slowed down - anything is possible!

- Finally, what you said about your sister being angry and not wanting support really struck a chord in me. Please please believe that no matter how your sister acts towards you, she loves you so much and is so grateful for your caring and support. She may not say it, but you'll have to say it for her. Tell her you love her and keep supporting her no matter how she acts (of course you would anyway - you're a great sister). My mother was also angry and withdrew into herself and I still go over it in my mind so I don't want you to feel guilt or like anything was left unsaid. I try to imagine what it's like to receive a death sentence and then try to live your life, and I put myself in my mother's shoes and I can understand how she was shutting out everyone because she was so terrified and depressed about her future. It's something that is so hard to visualize - everyone imagines they'll face disease gracefully and stoically, but we're all just human. Who wouldn't be angry, when they have so much to live for? And the closest loved ones are the ones who bear the brunt of that anger. I know my mother loved me and was my best friend to the end, just as I know your sister feels the same about you. You're doing the absolute best thing for her by being there for her.

Sorry for the long post, but I empathized so much with your post. You're not alone and you're not abnormal for being angry and scared. My best wishes and hopes for a remission on your sister's part, and freedom from pain.

Re: Finally, all of the answers

Tanoland - you are exactly right. We were living our lives, then BAM Cancer. My husbands has spread very rapidly since January to so many bones and his lungs. Although he is in constant pain even with the pain meds, he is so focused on making memories for our two small girls he works through the pain. Focusing on our girls has made him less angry and generally happier, I am wondering if there is something you could try to get your sister to focus on, that might bring some joy to her during this very difficlut time. Hang in there. - Colleen

Re: Finally, all of the answers

My sister used to be the kindest, funniest, most loving person I have ever met. And ever since February, when this was found, she has completely changed. No sense of humor, no smiles, no happiness. NO matter how hard we try. And we try really hard. I have a large very tight knit family who is full of faith and love God and we are just completely lost on what to do.

Re: Finally, all of the answers

They do have her on oxycontin but she said the pain is constant. Not severe, but constant. And the pain meds do help. It's hard to believe we just started this process and it is getting worse so fast. I appreciate everything you said and will take it to heart. You have really helped. I will keep supporting her and telling her I love her no matter what. Because no matter what I am going thru, it's completely unimaginable what she is feeling.

Re: Finally, all of the answers

Tanoland... You might ask doctor if there is something else she can take for pain as some people respond differently to different pain meds. I actually take Morphine slow release 4 times daily and Hydromorphone every 4 hours if needed for break through pain. Might help? It could cause drowsiness as with any pain med but I seem to do just fine with this set up. I'm glad to see you have a large supportive family to help each other through this trying time.God Bless,Jeff G.

Re: Finally, all of the answers

Dear Heather,My hearts aches for what you are enduring. I lost the love of my life, my incredible husband Jacques of 35 years to this dreadful disease in Nov. 2007. I miss him more and more each day. I have to tell you that no matter what you are told, hold on to hope and pray each day for a miracle. Enjoy each and every day with Lee - try to think of each day as a gift because each and every day is truly a gift. Look into each others eyes and have converstions, deep conversations, say things that need to be said, over and over again. Continue to fight and never give up or give in. Even though a day does not go by that I do not cry for how much I miss my Jacques, I am constantly researching and raising money for cancer research, trying to find anwers, all in the hope that one day loved ones will not have to endure the pain and heartache of the ruthless disease called CANCER. Stay strong and try to enjoy each and every day because I truly can attest that each and every day there is a precious memory and each memory is a gift. My thoughts and prayers are with you.

Re: Finally, all of the answers

My heart aches with each and every post -- it's so hard to think about the pain and suffering that so many people are going through!!! I know the agony of watching loved ones -- their pain is OUR pain -- in our hearts , our minds, our constant thinking. God's blessings on each and everyone of you. I have mentioned it before -- thought I'd offer a suggestion again. My husband had morphine and it didn't touch his pain. An angel of a nurse came up with the idea of "Dilaudid" -- one injection of that and the pain was gone and my husband rested peacefully. Love, Jean

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